They continue to be amazed at how well I am healing. And pretty impressed with their handiwork too. I have definitely grown fond of my little medical team.

Dr P had a look inside my mouth at the fibula flap. He’s happy with how it’s healing, very happy in fact.

Nevertheless, the wiring of my jaw needs to stay on for the regulation six weeks post-op. That’s another four weeks. I’m looking forward to getting it removed, but happy to wait out the wiring to make sure the jaw sets just right. Removal of the wiring requires day surgery under general anaesthetic. He assured us he wired it well and oh do I believe him.

He will see us again next Saturday. In the meantime, he referred us for a CT scan and OPG this week.

When we saw Dr A today, he also had a look inside my mouth at my fibula flap. All good. What he really wanted to look at, however, was his fine needlework on my left leg (from the fibulectomy) and neck (from the neck dissection).

He removed the long line of steri-strips from my leg, as well as the few remaining on my neck. The linear incision on my leg is not entirely healed so there was a little bleeding. Nurse, he cried.

Before the nurse took me away to do a few bits and pieces Dr A requested, we asked him a few questions.

How long will I stay on crutches, we asked. He’ll reassess the left leg at four weeks post-op and, all going well, I may be able to put some light weight on it. At six weeks post-op, I may be able to move to one crutch. At eight weeks post-op, I could be walking – gingerly – on my own.

What should I do now for pain relief? We are almost out of oxynorm and panadeine is ok during the day, but does not cut the mustard at night. He prescribed dissolvable panadeine forte but, as Darren discovered when he tried to fill the script a little while later, that doesn’t exist. Instead, I’m now on a double dose of ‘painstop for children’. Oh yeah. It describes itself as an analgesic syrup with antihistamine. Just for night-time when the pain is at its worst.

Can I have debulking surgery yet? He got the joke and laughed. You may remember he said not to bother asking for debulking surgery at three months post-op because he’ll tell me to wait until six months when the flap has settled properly.

At that point, he sent us on our merry way while he went to deal with real problems. We’ll see him again in two weeks time.

Our merry way led next door to the nurse. She cleaned and redressed the left leg wound. Then she set about the torture section of proceedings.

Some layers of skin around the tracheostomy wound are healing faster than others and showing what they call granulation. It’s an aesthetic issue. It just means the scar needs a bit of love and care to look its best as it heals. That love and care comes in the form of liquid nitrogen. When painted on, the liquid nitrogen burns off the top layer of skin to form a scab. This eventually peels off to reveal healthier looking scar tissue. As it turned out, I couldn’t even feel it.

That, however, brought us to the torture section of proceedings. The nurse had to remove the sutures that had held together my dissected neck. Some sections of my neck are entirely numb; others are not. Those weren’t difficult to identify as she cut the suture and then pulled it out with tweezers. Ouch. That done, the nurse cleaned it all up and taped my dissected neck back up with steri-strips. It is a lot more comfortable with the sutures removed.

Unfortunately, my neck skin is red raw and irritated from the dressing changes. She applied a simple gauze dressing to let the skin air and repair. Paw paw ointment should do the job, she said, or bio-oil. Try just to wash my face and neck with a washer, she advised, and just shower from the neck down. That way I won’t need a waterproof dressing to prevent water going down my trachey hole. If need be, I can put on the water proof dressings but otherwise I’m happy to give my poor skin time to repair.

With that, she sent us on our way. We need to come back to see her for more wound maintenance next Monday.

The last stop today was for my first post-op medical imaging, ordered by Dr P on Saturday. He’ll go through with us what the CT scan and OPG actually mean next Saturday, but the pictures were so pretty I couldn’t help but share…

Here is the OPG. In the middle, you can see the oh so attractive wiring on my teeth. The image is reversed, so the void where the teeth used to be is on the bottom right on the image. The bike chain look-a-like is the titanium plate holding my jaw together as the fibula flap heals to form my new jaw.

The scans envelope also contained this cool 3D reconstruction. Again, the image is reversed. It’s the left side of my face that’s funky. That is one fine jaw, right there.

I’ll be admitted to hospital tomorrow (Sunday) at 2pm. I have a sneaking suspicion they’ll want to jab me a few more times just for fun. I’m considering taking a sign, Frazzled Patient: Do Not Approach Without Emla. Too much?

We had our last consultation with Dr P yesterday. He’s grown on me, you know. He’s been terribly thoughtful in his own way.

We took along the MRI and OPG scans that we’d picked up on the way.

(In a little episode typical of our experience of the hospital’s administrative prowess, they hadn’t packed the scans for me to take and then the receptionist told us the radiologist’s report wasn’t done. That was fine, she assured us, she’d post it out to me next week. Seriously? But I digress.)

He took a quick squiz at the scans. He’ll study them over the weekend, he said, as will Dr A. He expects to remove my mandible (lower jaw bone) all the way up to the occipital condyle, just under my cheek bone, and all the way down to my left bottom canine tooth. He’d like me to keep the canine, but he thinks I probably won’t.

It sounds ugly, but really that’s only another two teeth to go now. I didn’t have a lower left wisdom tooth. The next tooth was sacrificed on the orthodontic altar for braces when I was 14 or 15. Another molar required only a little encouragement to go during my first biopsy because Blaster had eaten its roots.

He very much doubts he’ll need to do a lip split. My neck dissection will run from my ear under my jaw to my chin. That should give him enough access, as well as removing the first two levels of lymph nodes.

Another patient from the waiting room kindly came in to demonstrate Dr P’s fine needlework. He’d had similar surgery nine or so months ago. The scar was visible and the skin a little saggy around the jaw, but didn’t look too bad. He couldn’t open his jaw more than 2cm and that’s usual after surgery, said Dr P. Most people, but not all, can open their mouths 3.5cm, so it takes some adjustment.

I will definitely lose the inferior alveolar nerve, he clarified, but I may also lose the mandibular branch of the facial nerve. The IAN is responsible for sensation in my lower lip and chin. The mandibular branch of facial nerve communicates with the muscles for movement. A quick google reveals this nerve may be injured during neck dissections. A good one to keep your fingers crossed on.

What makes my surgery trickier though is my size, for a couple of reasons.

First, he told us while squeezing my cheeks, I have a small facial structure and there’s very little flesh on my facial bones. They’ll bulk it up as much as they can with the fibula flap. Removing some later (debulking) is an option, but adding is not. It also means the titanium plate will leave me with a slightly squarer jaw and I’m more likely than most to feel it when I press my face.

Second, my fibula will be slighter than most. Seeing it on the scans is not the same as holding it in his hands. It’s a call for the day whether they take more of the fibula bone and do some complex doubling over trick to make the reconstructed jaw sufficiently solid. It will just be hanging around in my leg with no purpose anyway.

Third, my internal plumbing will be fiddly. They’ll have it blown up on the big screen, but my veins and arteries will be more fine and the micro surgery more precise.

Fourth, and this was no more than a passing comment as we had one foot out the door and mentioned my chat about blood transfusion with Dr K, I’m more likely to need a blood transfusion. Indeed, we left with the impression that a transfusion is more likely than not. On a person of my size, it doesn’t take a large blood loss to be a good percentage of my blood volume. Yippee.

This is the final post in the three part Q&A series with my oral & maxillofacial surgeon, Dr P.

I have a pre-op consultation today with my plastic & reconstructive surgeon, Dr A. I also have a pre-op consultation tentatively scheduled with Dr P on 30 July, the day before my likely admission to hospital.

Q&A: RECOVERY

In hospital

What tubes etc will I wake up with? Are there any I might not be aware of?

Arterial lines

Venous lines

Tracheostomy tube

Urinary Catheter line

Neck drains

Leg drains

We reserve the right to place any other lines necesary for your health and monitoring

What will you look for to determine I am able to move from ICU to my own hospital room?

Flap viability, respiratory status, general medical condition

What will you look for to determine I can have the tracheostomy removed? How long is it usually left in?

Flap viability, respiratory status, general medical condition. Generally left in for 1-2 weeks

How is the tracheostomy removed?

The tracheostomy is removed in the ward by myself or another doctor. You will have tests done before to make sure you can breathe when we remove it. [Excellent idea.]

What will you look for to determine I can have the nasal feeding tube removed? How long is it usually left in?

Flap viability. We will remove in 1 week if able to tolerate oral feeding.

How is the NG tube removed?

The NG tube is removed by simple back pressure on the tube. Similar to the Urinary catheter.

When will I be able to get out of bed?

We encourage ambulation to minimise complications. If you have a skin graft we also like a period of immobility of 4-8 days so the graft can become adherent to the underlying tissue. Generally bed for 4-7 days, sitting out of bed thereafter, weight bearing slowly with a frame then assisted walking over 2-4 weeks.

What will you look for to determine I am able to be discharged from hospital?

Flap viability, tissue health, general medical condition

What blood tests will I need after surgery? What is their purpose? How often?

Daily blood tests to determine your status of recovery or illness. Similar with ECG or chest x ray.

I have a needle phobia. A PICC line was suggested. What are the pros and cons? What would I need to do to organise?

We will place the major lines while you are asleep. Pro’s are less smaller needles and the ability to hydrate you with blood or fluid as necessary. You do not need to organise anything.

UPDATE: To clear up the confusion, he means the needles will be fewer in number and smaller in size. He has also said that the IV line they use requires a lot less injections.

At home

When will I have follow up consultations with my surgeons? When? What will they be looking for?

Weekly follow up for 6 weeks. We are looking for infection, non union of the jaw, mal union of the jaw. Thereafter monthly/ 3 monthly visits

Will I have follow up tests? Which tests? When? What will they be looking for?

Follow up radiographs, OPG, CT. We are reviewing integration of the flap.

This is the second in the three part Q&A series with my oral & maxillofacial surgeon, Dr P.

I have excluded the questions about costs and invoices. In case anyone wonders about my ability to count to 45.

Q&A: SURGERY*

Surgery preparation

Will I need more tests or scans before admission to hospital?

It would be required to meet Dr L (Physician) to establish baseline Respiratory and Cardiac Function. The Anaesthetist will be advised of your admission and will view your results. Generally you will,have daily blood tests, ECG and Chest x ray in ICU. Thereafter daily or 2nd daily blood tests on the ward. [Yippee]

When will the blood tests, chest x-ray and ECG noted in my hospital admission paperwork take place? Before or after surgery?

The pre op tests will be done approximately 1 week before in the University Preadmission clinic.

Is there anything else I should be doing to prepare for surgery?

Refrain from Smoking, Alcohol, The use of blood thinning agents like anti inflammatories and Aspirin. Advise the medical staff if you have any unusual medical conditions, taking drugs or pills and any allergies. Exercise prior to surgery is OK. Do not chew hard food lest the mandible fracture and get infected.

How will my surgery be affected if I lose too much more weight?

It is not unusual to be catabolic after surgery. We would suggest pre operatively to put on weight by a high caloric diet.

Surgeons

Is there anyone else on my medical team that I could/should meet before my surgery?

I think he missed this one.

Who will be involved in the surgery other than Dr P (oral & maxillofacial surgeon) and Dr A (plastic & reconstructive surgeon)? What is their role?

Dr XX may be involved in the surgery. He is a Head and Neck Surgeon and I will advise you of his availability. Dr XX is the Advanced Fellow in Surgery. Dr XX and Dr XX are members of The University Cosmetic and Plastic Surgery Unit and may be involved. Our roles are multi disciplinary in that we all look after you in respect of your surgery and progress.

Who does the tracheostomy?

Dr XX, myself or Dr XX will do the tracheostomy. All the surgeons above can also do the tracheostomy as required.

Fibulectomy and fibula flap

What do you learn from my doppler ultrasounds on the artery and vein in my legs?

The Dopplers and Ultrasound are done to exclude that the Peroneal artery is separate and stand alone from the Posterior Tibial Artery.

Do you take the whole fibula? What happens to the joints or bone parts that remain? Do you take muscle with the fibula?

We take the whole fibula but preserve the distal 10 cm’s otherwise you could develop an unstable ankle joint. We take muscle with the fibula.

How will you know if the fibula flap is failing?

If the fibula flap is failing we see a change in colour of the flap, associated blood indcators like elevated white cell count, high temperature ad tachycardia. You will be unwell if infection sets in. We may organise a Technecium 99 Bone scan 3-4 days after surgery to confirm blood flow to the flap.

How much will I be able to move with my jaw wired?

We wire the jaw for 3-4 weeks for assistance with the healing process. Following this we place elastic bands for 2-4 weeks for partial assistance with mastication and occlusion. You will be fed by a Naso gastric tube for 1-2 weeks. Thereafter a full fluid diet, then a soft diet.

Mandibulectomy

How will you know if you have removed all the tumour?

We would suggest a repeat MRI 1 week before the surgery to give maximum information regarding bony infitration of the tumour. MRI’s do not produce radiation but give exact localisation of the tumour. [This doesn’t quite answer my question.]

What will you do if you can’t remove all the tumour?

Your preliminary findings suggest we can remove all the tumour. If the “final” pathology margins suggest we are not clear then we will advise you of a wider clearance needed as a separate surgery.

How much of my soft tissue will you remove? What will be the effect on my face?

You will have scarring, fullness or depression of facial aesthetic units, alteration of symmetry of face, compromised jaw opening, sensation or movement of the face.

We over correct the deformity and aim to give more fullness than depression of tissue. We may need to undertake repair/revision/reconstruction of tissue or jaw/teeth at a later date.

When will you get the results of the pathology on the removed tumour and mandible? What will you do if you find malignancy? What will you do if the tumour is not clearly benign?

The pathology will take about 1-2 weeks before the jawbone is “decalcified” to enable the patholoist to advise on margin clearance. We reserve the right to advise you on this and also the need for wider excision.

Will you do follow up checks with me in hospital? Will other doctors do follow up checks? For what and how often?

We will do daily follow up checks on you, this includes myself, Dr A, Dr XX, Intensive Care Specialists, Dr L (Consultant Physician) and other Doctors.

Nursing, Dietitian, Speech pathology, Physiotherapy also.

*Disclaimer: He did not have access to my files and his answers are indicative only.

He responded in a little under 2,000 words. By the next morning. While on holiday.

I read his email more than half a dozen times over the next day or so. His answers reassured me, as much by their existence as their content. Yes, they gave me a clearer picture in my head about how things would likely pan out but, more than that, they satisfied me he has this well in hand.

Your tumour is in the retromolar region of the mandible, extending forward to the body of the mandible and posteriorly to the ramus. The dimensions are approximately 4-7cms antero posteriorly, 3-4cms vertically and 2-4 cms transversely.

What has been destroyed other than the bone? Do you often see ameloblastomas this destructive of mandible etc?

The tooth roots have been eroded and this is indicative of the tumour process. The destruction of the jaw is similar in other people with this tumour. As a sub group the “Unicystic Ameloblastoma” is the only ameloblastoma that has a more innocuous and predictable outcome.

Do you often see ameloblastomas that have infiltrated the soft tissue? What does the infiltration of the soft tissue mean? Will it affect the surgery or prognosis?

Ameloblastomas erode mandible (bone), breaching the periosteum surrounding the mandible and may invade soft tissue. Although relatively unusual it depends primarily on the length of time you have had the tumour and also the aggressive local expansion of the tumour itself.

Infiltration of the soft tissue means we have to involve this in the resection (removal) as we want to minimise the chance of recurrence (Ameloblastomas have a high rate of recurrence). This will involve removal of adjacent muscle, fat, attached and free gingiva (gum) and associated nerves and blood vessels.

I do not believe we will need to remove external skin but this is predicated on soft tissue Frozen Sections (we cannot do bone frozen sections). Invasion of the soft tissue will mean more tissue is required to be removed, more tissue is required to replace it (Fibula Flap).

What does the pathologist in the second biopsy mean by: “a suggestion of basal palisading certainly prompts consideration of a residuum of an ameloblastomatous process”?

The description is that the 2nd biopsies showed a lot of reactive scar tissue and fibrosis from the first biopsy. The residuum confirms that Ameloblastoma was indeed found and concurs with the first biopsy and diagnosis.

The pathologist in the second biopsy wrote that the tumour has “a somewhat basaloid appearance, apoptotic cells are seen and scattered mitoses”. What does this mean? Is this the same as the pathologist in the first biopsy saying my tumour “exhibits basaloid features with evidence of apoptosis and occasional mitoses”?

Apoptotic cells are cells that are dead and dying, programmed as part of the tumour or living process. Mitoses indicate the tumour cells are dividing (ie. tumour is getting bigger)

The pathologist in the second biopsy wrote, “Overall the radiology had a somewhat aggressive appearance which could fit for a large ameloblastoma.” However, they also said, that the tumour’s appearance is an “unusual finding in a straightforward benign ameloblastoma”. What other diagnoses could the tumour’s appearance fit with?

The aggressive appearance is a term that denotes the expression of rapid growth, unusual features or a tendency towards malignancy. It is used by surgeons to convey to patients that a more aggressive approach to surgery is required In your case this essentially means mandibulectomy, resection of associated soft tissue and replacement with an autogenous flap (Fibula). This is aggressive surgery versus less aggressive surgery (enucleation or scooping out the tumour which we do for unicystic ameloblastoma).

Some other diagnoses that could be entertained include Pindborg Tumour (Calcifying Epithelial Odontogenic Tumour) but I rely on the pathologist for clarification, in your case they confirm it is an ameoblastoma.

The pathologist in the first biopsy said “unequivocal malignant features are not observed”. The pathologist in the second biopsy did not see “frank malignant features”. What would these features have been? How would they have differed from what the pathologists did see?

The pathologists confirm that in the biopsies noted they are clear and un-ambiguous that there is no process suggesting cancer (malignancy). Cancerous features may involve cellular atypia, bizarre or frequent mitoses, the absence of an ordered structure or other aspects histologically that do not resemble normal tissue.

The pathologist who undertook the first biopsy said had “done progesterone receptor on the tissue and found it to be strongly positive, raising the possibility of some degree of hormonal effect on this tumour”. What does this mean? Does the possible hormone effect suggest another or concurrent diagnosis?

He’ll get back to me on this.

In my notes, I wrote “if the biopsy results do not come back as clearly benign, I’ll likely have a CT PET scan”. Will I still have a CT PET scan?

You do not need a CT PET scan

*Disclaimer: He did not have access to my files and his answers are indicative only.

It’s a bit dispiriting. I feel I’m fighting the system. Putting your head down and just going with it seems to be the way of it.

It just feels wrong to me. And wrong for me.

I get that it is routine for them. I’m just not happy with blind faith. My health, my responsibility.

What I did achieve today was:

I have emailed my initial list of questions to J at Dr P’s office. She will forward them on to him on holidays. I pretty much begged for a pre-op consultation.

I spoke to Dr A’s office. I now have a pre-op consultation scheduled for next week.

I spoke to the pre-admissions office at the hospital. They don’t yet have my admissions paperwork. They will probably schedule my additional tests for the week before my operation. She will pass on my concerns to the dietitian.

Tracheostomy (hole in my throat directly to my trachea so I can breathe without my mouth and nose, needed because of post-surgery swelling), and

SSG (not the foggiest idea – anyone?).

Dr P has also made a few scrawls under ‘pathology tests requested’. It took a bit of trial, error and googling, but these seem to be:

FBC (full blood count, ooh blood test)

SMAC-20 (chemistry screen to check various chemicals in the blood, ooh another blood test)

ECG (electrocardiogram, to check electrical activity in the heart), and

CXR (chest x-ray).

And here I thought I was filling in some routine paperwork. When will I have these tests, I wonder?

The consent form Dr P signed also said he had explained to me my condition, alternative treatments available, as well as the nature, purpose, likely results, and material risks of the operation. I should add those points to my list of questions, I thought.

I popped in a little post-it note to J, Dr P’s assistant, asking her to schedule us for another consultation with Dr P before 1 August.

Any questions you think I should add to the list? Contributions gratefully accepted.

UPDATE: I have started a new page with questions that I plan to ask my surgeons before 1 August (still to be confirmed as surgery date).

The radiologists and the pathologists were concerned about the way the tumour had grown.

For the radiologist, it was the tumour’s proliferative activity, the buccal and lingual expansion and the perforation of the lingual cortex and the focal buccal perforation. That, I think, just means the way the cheek and tongue had expanded and the way the tumour had penetrated their outer layers.

The pathologists were concerned about the way the tumour’s cells looked: somewhat basaloid appearance, apoptotic cells and scattered mitoses. From what I took in speaking to Dr P this morning, this means the way the tumour had infiltrated surrounding tissue.

The two properties that separate cancer from your garden variety benign tumour are metastasis and invasiveness. Metastasis is the ability of the tumour to spread from one organ to another and to start the growth of a secondary tumour. This is the aspect of cancer that really scared me. Invasiveness is the ability to infiltrate and destroy surrounding tissue. Benign tumours are more visually defined than malignant tumours.

We already knew my tumour is aggressive and destructive. It has eaten away at my jaw bone (mandible) until paper thin in sections and it has eaten into the surrounding tissue.

It seems the degree of invasiveness was an ‘unusual finding in a straightforward benign ameloblastoma’. But it lacks ‘frank malignant features’.

So yes, they will have to remove a great deal of my jaw. Yes, they will have to take a large margin around it to be sure they get all the cells from the tumour that have invaded the surrounding tissue. But this aggressive resection will mean it is really unlikely that the tumour will grow back in my jaw. Possible, but very unlikely. And because it is not malignant, a related tumour is not going to pop up elsewhere unannounced.

Back to The Plan – Part 2. Never did I think I would be so thankful.

If you haven’t had your fill of big medical words, feel free to read on…

The histologic appearances in all of the three biopsies predominantly reflect organising fibrosis and granulation tissue with occasional strips of reactive bone all of which could reflect a reaction to prior biopsy. In specimens 1 and 2, rare islands of odontogenic epithelial cells persist and although a suggestion of basal palisading certainly prompts consideration of a residuum of an ameloblastomatous process.

I have taken this case in conjunction with the imaging to the Royal Prince Alfred bone and soft tissue tumour meeting which is attended by Professor H who reported the original biopsy. He has sent the initial material to Dr C in the USA in consultation as he had some concerns regarding its proliferative activity.

Professor H kindly brought recuts of the histology to the meeting, The images were reviewed in which the presence of a destructive radiolucent lesion of the left posterior mandible with perforation of the lingual cortex and focal buccal perforation. The lesion had focally multiloculated appearance and it extended into the ramus of the mandible. On MRI it had a heterogenous appearance with soft tissue extension on the buccal and lingual aspect. Overall the radiology had a somewhat aggressive appearance which could fit for a large ameloblastoma.

I have reviewed the sections originally reported by him in which the presence of an ameloblastoma with a partly cystic and partly solid infiltrative appearance is confirmed. As noted by Dr H, much of the ameloblastomatous component has a somewhat basaloid appearance, apoptotic cells are seen and scattered mitoses are noted, an unusual finding in a straightforward benign ameloblastoma. While these findings are of some concern, frank malignant features are not seen.

Professor H did inform me that he had done progesterone receptor on the tissue and found it to be strongly positive, raising the possibility of some degree of hormonal effect on this tumour. Within the current material as receive by me. scattered islands of residual epithelium consistent with residual ameloblastoma are noted in speciment 1 and 2. Residual tumour is not seen in specimen 3.

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I had a jaw bone tumour called an ameloblastoma. The tumour (and much of my left lower jaw) was removed in a mandibulectomy and mandibular reconstruction on 1 August 2011. I write to clear my head and share news.